4.1 Significance of Assessment for Independent living of PwIDs
The Center on Transition Innovations posts the following definition of independent living.Independent living is defined as “those skills or tasks that contribute to the successful independent functioning of an individual in adulthood” (Cronin, 1996). We often categorize these skills into the major areas related to our daily lives, such as housing, personal care, transportation, and social and recreational opportunities.
A living arrangement that maximizes independence and self-determination, especially of persons with disabilities living in a community.
Independent living, as seen by its advocates, is a philosophy, a way of looking at society and disability, and a worldwide movement of people with disabilities working for equal opportunities, self-determination, and self-respect. In the context of eldercare, independent living is seen as a step in the continuum of care, with assisted living being the next step.
In most countries, proponents of the IL Movement claim preconceived notions and a predominantly medical view of disability contribute to negative attitudes towards people with disabilities, portraying them as sick, defective and deviant persons, as objects of professional intervention, as a burden for themselves and their families, dependent on other people’s charity. These images, in the IL analysis, have consequences for disabled people's opportunities for raising families of their own, getting education and work, which, in turn, result in persons with disabilities making up a large portion of the poor in any country.
National conference on Employment leads Independent Living of Persons with Mental disorder (PwID)
NIMH The National Institute for the Mentally Handicapped, popularly known as NIMH, was established at Secunderabad, in the year 1984 as an autonomous body under the Ministry of Social Justice and Empowerment, Govt. of India. NIMH values equal opportunities, protection of rights and full participation of the persons with Mental disorder. The institute developed indigenous service models based on research and development activities of the institute. These models have become the part of the curriculum of the professional courses. So far home based, community based, group parent training, early intervention services, special education models, and vocational models, have been developed, which are widely used in the country. The conference PwID constitute around 94 in one lakh in our country as per the records of the National Sample Survey Office Publication in 2003.
The service providers in the area of mental disorder are around 1200 in our country. It is estimated that around 60% of the service providers have provision for vocational training for PwID of 18 years and above. In the present scenario our country does not have a uniform pattern of transition, vocational assessment and vocational training, placement and follow up procedures. The concept of independent living is far from reality.
The primary aim of the national workshop on “Employment & Independent Living of Persons with Mental disorder” is to connect and network with members in the field of vocational rehabilitation of persons with mental disorder, to arrive at a roadmap which would be a guideline for planning and implementation for future services for PWID.
Independent Living Skills Assessment
Independent Lifestyles recognizes that consumers have a variety of IL needs as well as differing abilities and barriers that may keep them from living as independently as possible. Independent Lifestyles designed the Independent Living Skills Assessment. This evaluation tool is comprehensive, asset-based, and aims to highlight the consumer’s strengths and abilities. The assessment is based on consumer accomplishment of tasks through direct and indirect observation, self-assessment, and interviews. The following categories are included on the assessment:
· Personal Hygiene
· Dressing and Clothing Care
· Health Care
· Cooking, Eating, Nutrition
· Home Management and Home Safety
· Financial Management
· Personal Growth, Awareness, and Problem Solving
· Community Access
Upon completion of the assessment, a thorough summary of the evaluation and recommendations are provided. The assessment is used only as a guide and may be altered depending on the individual needs of the consumer.
4.2 Assessment for Transition from School to Work
Work is a central part of adult life, consuming as much as half of our waking hours. People often identify themselves by the work that they do. A job can provide a sense of accomplishment and pride and have an enormous effect on our overall life satisfaction, or it can serve as a source of frustration and dissatisfaction. Finding the right job—simply knowing what it might be—is not easy, even for highly skilled individuals. Doing so is even more difficult for those who lack adequate training or face special challenges, such as a disability.
TRANSITION FROM SCHOOL TO WORK
The length and the quality of the schooling that individuals receive have an impact on students’ transition from education to work; as do labour-market conditions, the economic environment and demographics. For example, in some countries, young people traditionally complete schooling before they look for work; in others, education and employment are concurrent. In some countries, there is little difference between how young women and men experience their transitions from school to work, while in other countries, significant proportions of young women raise families full time after leaving the education system and do not enter employment.
To improve the transition from school to work, regardless of the economic climate, education systems should aim to ensure that individuals have the skills that are needed in the labour market. During recessions, public investment in education could be a sensible way to counterbalance unemployment and invest in future economic growth by building the needed skills. In addition, public investment could be directed towards potential employers in the form of incentives to hire young people
The transition from school to work, post-secondary education, and/or community adult living can be difficult for all students—and uniquely so for those with disabilities. The tasks of choosing a job and preparing for work, deciding to go to college or trade school, deciding where to live and with whom and other areas of decision making present youth with disabilities the challenge of having to make complex decisions. Professionals can assist students in making these decisions by involving students in meaningful assessments that will assist in matching the students’ abilities and preferences to appropriate academic, vocational and functional education programs.
Purpose of Transition Assessment
A clear understanding of the student’s strengths and needs is critical to developing and implementing effective transition plans. The purpose of transition assessment is to help Individualized Education Program (IEP) teams determine the appropriate courses of study and community/vocational experiences that the student will need to be successful in post-school goals. Whether a student is interested in pursuing postsecondary education, trade school, employment (supported included) or other activities associated with adult living, assessments will provide valuable information about the student’s abilities and deficits.
Transition assessment can assist teams to:
· Meet IDEA mandate
· Determine strengths, abilities, and deficits
· Determine future planning needs and goals
· Identify interests and preferences
· Determine and evaluate appropriate instructional settings and supports
· Determine level of self-determination skills
· Determine level of independent living skills
· Determine necessary accommodations, supports, and services
· Develop goals/ objectives for the IEP and the transition component of the IEP
· Identify supports (linkages) needed to accomplish goals
· Track progress
· Provide feedback
Types of Transition Assessments:
· Aptitude tests/ Achievement tests
· Behavioral Assessment information
· Informal interviews with student and family
· Personality tests
· Self-determination assessments
· Vocational assessments
· Interest inventories
· Work-related temperament scales
· Teacher observations
· Formal assessments
· Previous IEP and diagnostic summaries
· Checklists/ questionnaires
Formal Transition Assessment Methods
Choosing Published Tests and Assessments There are a number of factors to consider when choosing tests and assessments. The ideal assessment instrument is 1) reliable, 2) fair, 3) valid, 4) cost effective, 5) of appropriate length, 6) well matched to the qualifications of the test administrator and 7) easy to administer and interpret. The instrument should also provide information on cultural considerations and accommodations for youth with disabilities. Results should be provided in easy to understand language and formats.
Adaptive Behavior Assessment information helps determine the type and amount of special assistance that people with disabilities may need. This assistance might be in the form of homebased support services for infants and children and their families, special education and vocational training for young people, and supported work or special living arrangements such as personal care attendants, group homes, or nursing homes for adults.
Each test relies on a respondent such as a parent, teacher, or care-provider to provide information about an individual being assessed. With some tests respondents are interviewed; with other tests respondents fill out a response booklet directly. Examples include:
· The Scales of Independent Behavior - Revised (SIB-R)
· The Vineland Adaptive Behavior Scales
· AAMR Adaptive Behavior Scales (ABS)
· The Inventory for Client and Agency Planning (ICAP)
Career Maturity or Readiness Tests are designed to measure developmental stages or tasks on a continuum. The degree of an individual’s career maturity is determined by the individual’s location on the developmental continuum. Examples include:
· Career Maturity Inventory (CMI)
· Career Thought Inventory (CTI)
· Career Beliefs Inventory (CBI)
· Career Development Inventory (CDI)
· Career Decision Scale (CDS)
4.3 Assessment Tools for Independent Living –BASAL-MR, VAPS
Behavioural Assessment Scales For Adult Living-Mental Retardation (BASAL-MR)
The BASAL-MR marks the culmination of several years wok by Drs. Reeta Peshawaria, D.K.Menon, and their colleagues. The scale was designed to provide a means of assessing the functional abilities of adult with MR. by focusing on practical abilities as well as problem behavior, the scale provide an alternative assessment that should be very useful for families and professionals/ this instrument builds on the author’s previous work in developing a scale for child assessment(BASIC-MR) and reflects their families.
BASAL-MR have been designed to elicit systematic information on the current level of competencies/behaviors in adults with mental retardation. The scale are suitable for the use with mentally retarded adults who are 18 years and above. It has been developed in two parts:
Part A: The items included in part A of the scale help to assess the current level of skills/behaviors/competencies in the adult. It can be used as a curriculum guide for planning training programmes based on the individual’s need. It consists of 120 items grouped under 8 domains:
· Personal care and appearance (PA)
· Food management(FM)
· Household tasks and responsibility(HR)
· Community and leisure(CL)
· Sexuality (S)
· Functional literacy(FL)
There are 15 items in each domain
DEVELOPMENT OF BASAL-MR(PART A)
The following steps were taken to develop BASAL-MR(PART A):
1. Formation of initial item pool
2. Selection of items for initial tryout
3. Preparation of BASAL-MR(PART A)
4. Initial tryout and first revision of BASAL-MR(PART A)
5. Pilot study and second revision of BASAL-MR(PART A)
6. Final study of BASAL-MR(PART A)
7. Sensitivity of BASAL-MR(PART A)
SCORING OF BASAL-MR (PART A)
· Level one: independent- score 5
· Level two: clueing/modelling- score 4
· Level three: verbal prompting- score 3
· Level four: physical prompting-score 2
· Level five: totally dependent- score 1
· Level six: not applicable- score 0
Part B: The item included in this part of the scale helps to assess the current level of problem behavior in the adult. It helps to identify and assess the maladaptive behavior/problem behaviors in mentally retarded adults.
It consists of 109 items grouped under 12 domains:
· Physical harm toward others
· Damages property
· Misbehaves with others
· Temper tantrums
· Self-injuries behaviors
· Repetitive behaviors
· Odd behaviors
· Inappropriate social behaviors
· Inappropriate sexual behaviors
· Rebellious behaviors
· Hyperactive behaviors
The number of item within each domain varies.
DEVELOPMENT OF BASAL-MR(PART B)
The following steps were taken to develop BASAL-MR(PART B):
1. Applicability of existing problem behavior checklist with adult mentally retarded individuals.
2. Formation of item pool and preparation of BASAL-MR(PART B)
3. Tryout and first revision of BASAL-MR(PART B)
4. Pilot study and second revision of BASAL-MR(PART B)
5. Final study of BASAL-MR(PART B)
6. Sensitivity of BASAL-MR(PART B)
SCORING OF BASAL-MR (PART B)
For the given person with MR, check each item of the scale and rate them along a three point rating scale, viz. never, occasionally or frequently.
· If the stated problem behavior has “never” been observed or reported in the person, then give a score of 0.
· If the stated problem behavior occurs sometimes(once in a while), it is rated “occasionally” and given a score of 1.
· If the stated problem occurs quite often or, habitually it is rated as “frequently” and given a score of 2.
Vocational Assessment And Programming System (VAPS)
The vocational assessment package should be simple, easy and cost effective. Generally in Indian context we use VAPS, which is Vocational Assessment and Programming System For Person With Mental Retardation.
It is the work related assessment and programming system developed by A.T. Thressia Kutty of NIMH in the year 1998.
The system consists of ;
1. Vocational Profile
1 Identification data
· Name of the trainee
· Sex / Age / Date of Birth
· Level of Mental Retardation
· Marital status of the trainee
· Father’s / Guardian’s name
· Occupation & Address
2 Family History ( Pedigree Chart)
3 Socio Economics Status
· monthly Income of Parents
· Rural / Semi Urban / Urban
4 Generic Skills – ( Readiness Skills )
5 Associated Conditions (tick )
· Physical handicap
· Hearing Handicap
· Visual Handicap
· Psychiatric Feature
6 Training Received
· Normal School
· Special school
· Vocational Training
· Any other
7 Daily Routine
· 6.00 am to 9.00 am
· 9.00 am to 01.00 pm
· 01.00 pm to 5.00 pm
· 05.00 pm to 9.00 pm
8 Experience in Employment
9 Possibilities of employment
10 Area in which guidance required (tick)
· Family Counseling
· Guidance to select a job
· Vocational Training
· Mobilization of funds
· Project Preparation
· Any Other
11 Selection of suitable job ( based on generic Skills assessment & Vocational Profile )
2. Generic Skill Assessment checklist
Generic skills Assessment checklist consists of 8 domains in which total 80 items are listed. Domains are as follows;
3. Job Analysis format
It is the plan used by the employment trainer to ensure that employee are able to perform their job to the standard agreed to when negotiating with employers.
Job analysis serve the major three purposes
· It serve the training plan to facilitate successful employment for the new employee
· It can be used as an accountability measure to ensure that the trainees work is of highest quality possible
· It can offered as the resource to the employer providing the job
4. Work Behaviour Assessment checklist
4.4 Provisions & Schemes of MoSJE for Vocational Skill Development
Deendayal Disabled Rehabilitation Scheme (DDRS)
The Deendayal Disabled Rehabilitation Scheme (DDRS) is a Central Sector Scheme that includes projects for providing education and vocational training and rehabilitation of persons with mental disabilities. The Scheme is being implemented since 1999 with the following objectives:
• To create an enabling environment to ensure equal opportunities, equity, social justice and empowerment of persons with disabilities.
• To encourage voluntary action for ensuring effective implementation of the Persons with Disabilities (Equal Opportunities, Protection of Rights and Full Participation) Act, 1995.
Gyan Prabha (Scholarship Scheme) under NT Act
The objective of the scheme is to provide financial assistance for pursuing vocational training/ professional courses leading to skill development and employment for persons with disabilities.
National Handicapped Finance and Development Corporation (NHFDC)
National Handicapped Finance and Development Corporation (NHFDC) is a wholly owned company by Government of India. NHFDC functions as an apex institution for extending financial support for education, employment and entrepreneurship of the persons with disabilities through the State Channelizing Agencies (SCAs) nominated by the State Government.
NHFDC provides skill training and entrepreneurship development through training institutes/organisation, both government and private. The training duration ranges from one month to six months.
4.5 Documentation of assessment, Result interpretation & Report writing – Implications of assessment, Outcomes for Community living
Community living and participation means being able to live where and with whom you choose; work and earn a living wage; participate in meaningful community activities based on personal interests; have relationships with friends, family and significant others; be physically and emotionally healthy; be able to worship where and with whom you choose (if desired); have opportunities to learn, grow and make informed choices; and carry out responsibilities of citizenship such as paying taxes and voting.
The benefits of living in smaller community settings are well-documented. People who live in these environments have more choices and control over their lives, have more friendships, are engaged in their communities, are safer, and experience greater life satisfaction. The ability to live and thrive in individualized living situations and be in charge of their own home (e.g., staff schedule, what/when they eat, who visits and when) is possible for all persons regardless of need when the funding and supports are made available to them. That is, all people, regardless of the significance of their disability, can lead lives they control by being supported to experience the opportunities that community life offers and to choose how they will participate in their communities. All too often, many individuals with intellectual or developmental disabilities (IDD) are never afforded these opportunities and in many instances, there is systemic denial of choices due to constraints of service delivery systems to provide such opportunities. Instead, low expectations sometimes held by professionals, families, community members, and others who touch the lives of people with IDD, result in perpetuated assumptions that people with IDD need and require 24-hour support, group employment, and group living.
· Access to community services. Many people with disabilities experience access challenges to individualized community supports. There are many issues that create barriers for people with significant disabilities to live and work in the community.
· Quality in community services. There is wide variability of quality within community residential, employment and other support models
· Funding for community services. The various funding mechanisms used to support community living and employment are using antiquated models; the funding policies are not flexible, do not meet the needs of individuals
· Workforce challenges. The ability to meet the needs of people with IDD in the community, ensure quality of community services, and offer more flexible and individualized options requires a better compensated, stable, highly ethical and competent workforce.
· Position Everyone with an intellectual or developmental disability deserves to live in the community where they have the opportunity to experience vibrant lives that include work, friends, family, and high expectations for community contributions. Our systems to support people with IDD should promote individual growth and development through the provision of best practices in fully integrated community settings. It is essential to close institutions and at the same time create and support our existing communities to develop the capacity to support all people with IDD in their communities through individualized supports
In India, it is a fair presumption that PwDs are not seen as a human resource who could contribute and participate in nation building. Their talent, skills and potential mostly remain untapped, under-utilized or under developed. Further, the education and employment rates for persons with disabilities are far lower than the non-disabled persons. The opportunities for PwDs, to earn is less and their expenses more resulting in them being one of the more impoverished communities in India.
PwDs face serious barriers in getting jobs. Unequal access to education and training programmes is a major challenge that needs to be resolved a priority. Then they need to be able to learn about and obtain jobs, which they can physically access and work at despite their disability. They also face social and psychological barriers - ignorance, myths, prejudice, stereotyping and misconceptions about their capacities, acceptance by fellow workers, and low self-esteem, fear and over-protective families. Bringing about changes to existing infrastructure is a key need to improving access for the physically disabled, with employers also often reluctant to provide accessibility and supportive facilities. In general, there is little legislative support for disabled people, and where protective laws exist they may be poorly enforced. Technology may provide support in certain areas – for example, computers and the Internet could help those with mobility or communication difficulties, but these would need to be made available consciously to poor people (De Marco, 2009). Including disabled people in the NRLP would require these – and other – issues to be squarely addressed.
While mentioning the strategies, the report emphasizes that PwDs face immense challenges and both poverty reduction and human rights programmes have a lot of ground to cover. Community Driven Development Programmes (CDDP) have typically addressed disability through sub-project level interventions that are geared towards vulnerable groups such as the disabled, elderly or children/youth at risk.
The picture is not very encouraging in the non-government arena as very few NGOs are working in the field of livelihood for PwDs. Further, whatever little is happening in the area of livelihood options for PwDs is hardly being shared; thus minimizing the chances of replication of good practices from the field. The documentation of such initiatives in order to further nationwide emulation thus becomes the need of the hour. Learning regarding what works and what does not work could be most valuable so as to avoid reinventing the wheel. There is also a need to develop basic understanding on the diversity and heterogeneity of PwDs in relation to designing livelihood options. Diversity in categories of PwDs, pose immense challenges in planning livelihood strategies in a compartmentalized manner. The methodology of doing the same work could be different for different categories. This may call for either remodeling the work place or redesigning machine tools or both.